Rare Community Profiles: Revving for Hope: Raising HoFH Awareness in One Ride
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their
In some cases, healthcare providers can identify Angelman syndrome in utero through a prenatal ultrasound or prenatal genetic testing. But could this open the door
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their
A new global study (THAOS NCT00628745) of over 6,000 people who had been diagnosed with ATTR amyloidosis found that almost one in every four patients
Ultomiris (ravulizumab) and Soliris (eculizumab), both developed by global biopharmaceutical leader AstraZeneca, are both effective treatments for paroxysmal nocturnal hemoglobinuria (PNH) and atypical hemolytic uremic
When you’re a baseball fan, any chance you get to join in and really experience the game is amazing. Seven-year-old Ella McKee has always been
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we
Vision loss can be challenging. If you could have a one-time gene therapy that would improve your visual acuity, would you take it? It seems
Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast” is back with a new episode. This week, Colby is sitting
Over 100,000 individuals living in the U.S. are on a waiting list for an organ transplant. An average of 17 people die each day while
During the past three years two drugs (Aduhelm and Leqembi) that were designed to slow the progression of Alzheimer’s disease, have been approved. A verdict
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